Chronic Digestive Disorders

Posted by rozy288 @rozy288, Jun 5, 2021

I am suffering 7 years with chronic digestive disorders , that take me out every day and night . I have Chronic Gastritis, Esophagitis, Class B GERD , small Hiatal hernia , diverticulosis. The worse thing is , I deep wet beach what tastes like sewer water 2000-3000 x a day/ night . My gut can’t handle any kind of food . It just constantly churns and is so loud , non stop . I live on Ultra Pepto . I’ve tried everything under the sun , RX wise , holistic wise , diet and elimination wise . Had so many tests done ✅. Even did acupuncture and 3 sessions of hypnotherapy. 6 Gastro Drs , in 2 states . I’m not celiac and no h pylori . I Eat small and healthy when I can eat . No fast food , no caffeine , low sugar ( just fruit) low dairy . Tried Keto and Gluten free . I’m on waitlist for Mayo Clinic in Jacksonville 6 weeks now . I’m a medical mystery and it’s now getting to me emotionally. I can’t lead a normal life . So much I want to do and I’m always sick . No Dr. has helped yet . I pray daily for relief of symptoms. Even for a day or two of relief. I’m desperately seeking and tried everything they make for gut health on Amazon. Today I will start on antidepressant . I’m sick if I eat or don’t eat and have empty stomach. We rarely go out to lunch and never to dinner . Just cook at Home . My poor body is getting weary of this . 7 years taken away and counting .
Thanks, Rosemary

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@astaingegerdm

@fari9 - I also ended up in ER some years ago with Candida esophagitis. Thrush all way down. Also have GERD. At the time I was taking antibiotics frequently as well as prednisone now and then.
I thought I had a heart problem because of the severe pain.
At the time I was treated with antifungal medication.
Have you had another endoscopy to see why the pain is there? Reflux can cause a lot of pain.

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I don't have reflux issues where you usually would think of like in my chest, unless its coming up all the way to my throat, but it's hard to pinpoint.

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@fari9

I don't have reflux issues where you usually would think of like in my chest, unless its coming up all the way to my throat, but it's hard to pinpoint.

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@fair9 - Thanks for more details. It’s possible that antibiotics and prednisone caused your thrush.
If you have dry mouth you have to do your best to keep it moist.
Vomiting with coffee ground material means there is bleeding in the stomach- this is probably the result of prednisone.
If you haven’t had one very recently I think you need another endoscopy to see what is going on.

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Update :
I went to Mayo Clinic for 3 tests , Endoscopy (my 3 rd in 5 years) w/ endo flip . Entroscopy ( w/ contrast ), which is a c scan of just small intestines. 2 hr SIBO test .
I was assigned to a random Gaste Dr. That they picked out for me . I wasn’t allowed to just pick one and waited 8 months to get on .
4K $$ later ( and $800 for lodging 3 nights )… I was back yo square one ☝️.
They didn’t help me find out anything more than I knew .
His suggestions were deep breathing exercise classes , or speech therapy!!! Or a strong antidepressant . Ok ✅.. No no and no ….
I’ve tried a few low dose antidepressants through all these years . Along w/ elimatiin diets, every supplement they make for gastric health , and everything else I org wrote about .
Now it’s May 2023 …
I’m worse than ever .
Close to 10 years in . Day & Night w/o a days break .
I went to my old Gastro Dr here who I was seeing in 2020 . She said , why are you back here !! I was like , because I went to Mayo like you told me and got no help , just bills .
Now I haven’t seen a new Gastro Dr in over a year. I saw a FM APRN but she’s all over the map 🗺️ w/ things .
Plus I pay out of pocket .
I did they Keto diet recently but to no avail . My 1000’s of deep non stop belching and non stop churning gut is horrendous. Plus it’s causing me so much fatigue during day and I don’t want to eat , but I’m sick 🤢 if I’m digesting or empty gut . My heart palpitations are getting worse because I know I have Gastro Cardiac Syndrome now .
I live on Ultra Pepto and Heart Calm ( Triple Magnesium). My life has been ruined 10 years. No Joy , can’t eat . Don’t really have the energy to do much but housework and take care of my dogs . Hubby still works and is very patient and kind but it takes away from us having any fun .
Definitely depressing.
I’m 2.5 hrs from Cleveland Clinic Weston , FL . Anyone ever been to this Dr.? Or any there ?
Sorry to ramble …just still looking for answers to feel better / even if it’s only 1-2 days a week .

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I’m new to this group. I appreciate that you feel safe enough to share. You sound at wits end. I empathize with you. Thank God you have an understanding husband. Having Crohn’s, diverticulosis, colitis, fibromyalgia, and arthritis (I’ll stop there), seems most “helps and meds” are short lived. The entire process of living in these nightmares is a personal Hell. Yet, you struggle onward even rage against the pain and suffering. Why? Because you still have Life! Not as you want it to be but AS IS. You are not about to give up or give in…and, I know the fatigue, pain, and anguish can feel overwhelming but You Keep Fighting the good fight! We WIN because we Believe that we can! We don’t look pretty at the finish line but these auto immune disrupters know we put up a good fight with Intent to Win!

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@cdbm

I’m new to this group. I appreciate that you feel safe enough to share. You sound at wits end. I empathize with you. Thank God you have an understanding husband. Having Crohn’s, diverticulosis, colitis, fibromyalgia, and arthritis (I’ll stop there), seems most “helps and meds” are short lived. The entire process of living in these nightmares is a personal Hell. Yet, you struggle onward even rage against the pain and suffering. Why? Because you still have Life! Not as you want it to be but AS IS. You are not about to give up or give in…and, I know the fatigue, pain, and anguish can feel overwhelming but You Keep Fighting the good fight! We WIN because we Believe that we can! We don’t look pretty at the finish line but these auto immune disrupters know we put up a good fight with Intent to Win!

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What choice do we have ?
I have two grown kids that just got married ( both have been out of the nest since college ) now 30 and 34 . They both just got married in 2022. So I’m sure they will be starting families soon .
I have two loving dogs that depend a lot on me and my husband. I have some close friends but in other states .
No real friends here where I live . My kids are 2 hrs away and we only see them every 3-4 months for a day and a night .
I don’t drive last 4 years in FL , it’s too crazy here .
I want to give up … I really do . I’m tired as you I’m sure are of living like this and being so sick you can’t enjoy a meal , can’t sleep 💤 well , can’t just be w/o suffering .
It’s a double edged sword 🗡️. Staying here or not want to ne here anymore.
Life has not been enjoyable for almost 10 of my 61 years .
I’ve had plenty of ups and downs before that but I was healthy then .
So we keep going …
We pray maybe one Dr. Or that the Lord would help us .
I’m tired ,
We leave for a weeks vacation after 4.5 yrs not going on one .
I’m not at all excited.
That’s sad …
I’m going for my hubby and my pups 🐶.
It’s an Ocean front townhouse two hrs north of us .
I’ll do the best I can .
Thank you for your kind words and I pray 🙏 for you too .

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@rozy288

What choice do we have ?
I have two grown kids that just got married ( both have been out of the nest since college ) now 30 and 34 . They both just got married in 2022. So I’m sure they will be starting families soon .
I have two loving dogs that depend a lot on me and my husband. I have some close friends but in other states .
No real friends here where I live . My kids are 2 hrs away and we only see them every 3-4 months for a day and a night .
I don’t drive last 4 years in FL , it’s too crazy here .
I want to give up … I really do . I’m tired as you I’m sure are of living like this and being so sick you can’t enjoy a meal , can’t sleep 💤 well , can’t just be w/o suffering .
It’s a double edged sword 🗡️. Staying here or not want to ne here anymore.
Life has not been enjoyable for almost 10 of my 61 years .
I’ve had plenty of ups and downs before that but I was healthy then .
So we keep going …
We pray maybe one Dr. Or that the Lord would help us .
I’m tired ,
We leave for a weeks vacation after 4.5 yrs not going on one .
I’m not at all excited.
That’s sad …
I’m going for my hubby and my pups 🐶.
It’s an Ocean front townhouse two hrs north of us .
I’ll do the best I can .
Thank you for your kind words and I pray 🙏 for you too .

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I’m sorry or I understand the hell GI problems are, As for me I don’t want sympathy, just understanding. My traveling days are over, I’m only 58. Just making it to work and getting through it is hard. I would gladly give up 10 years of my life if I could retire. There is really only one way the pain will end for me,will continue to fight as long as I can, my elderly parents depend on me so that keeps me going

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I highly recommend seeking out a functional medicine doctor since you all have gone through the medical system that isn’t giving you answers or helping. I had digestive issues and had 3 endoscopies over 7 years and always put on a prescription that helped. But once I was off them, symptoms returned. At my last endoscopy, the GI doctor told me to never take the med I was on again. I had been put in a Proton Pump Inhibitor or PPI and the cells in my gut were hypertrophic (very enlarged).
I turned to functional medicine that treats the cause. I was tested for SIBO, SIFO, yeast, mold and parasites. I had everything except parasites. You can search for a functional medicine doctor by city and state at ifm.org. Seek one out that specializes in digestive disorders and preferably also has a nutritionist on staff. I’ve been with mine for two years and I’m recovering well, feeling normal. Stress also needs to be addressed but not with antidepressants. Seek out a good mediation app that helps you with breath work and teaches how to regulate yourself when you start feeling stressed. Stress is a huge gut disruptor. If you haven’t read anything about the brain and gut connection, Google it and learn about how our thoughts/stress affect the gut.
I wish you all the best in your journey and hope you find relief.

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@gigi4

I highly recommend seeking out a functional medicine doctor since you all have gone through the medical system that isn’t giving you answers or helping. I had digestive issues and had 3 endoscopies over 7 years and always put on a prescription that helped. But once I was off them, symptoms returned. At my last endoscopy, the GI doctor told me to never take the med I was on again. I had been put in a Proton Pump Inhibitor or PPI and the cells in my gut were hypertrophic (very enlarged).
I turned to functional medicine that treats the cause. I was tested for SIBO, SIFO, yeast, mold and parasites. I had everything except parasites. You can search for a functional medicine doctor by city and state at ifm.org. Seek one out that specializes in digestive disorders and preferably also has a nutritionist on staff. I’ve been with mine for two years and I’m recovering well, feeling normal. Stress also needs to be addressed but not with antidepressants. Seek out a good mediation app that helps you with breath work and teaches how to regulate yourself when you start feeling stressed. Stress is a huge gut disruptor. If you haven’t read anything about the brain and gut connection, Google it and learn about how our thoughts/stress affect the gut.
I wish you all the best in your journey and hope you find relief.

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Been seeing a FM Dr. Last 5 months . Did extensive bloodwork/ stool testing ( 2 diff types ), urine …
Tried two diff meds ( no more PPI’s ) .. not for years. I only tried a few for a few months . They aren’t good for you and made for short term use only .
So I’ve done ✅ all that , I went on keto diet at her suggestion.
That did not help at all .
I’ve run the spectrum.. still they can’t help me . I’m actually a medical mystery.

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@danwg

I’m sorry or I understand the hell GI problems are, As for me I don’t want sympathy, just understanding. My traveling days are over, I’m only 58. Just making it to work and getting through it is hard. I would gladly give up 10 years of my life if I could retire. There is really only one way the pain will end for me,will continue to fight as long as I can, my elderly parents depend on me so that keeps me going

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I’m praying for you too …. We are in a horrible place in this life and having people understand it is so key . Most are sick of hearing about it , so I just don’t talk on phone anymore to anyone because I feel like I don’t have anything good to say . I just ask them how they are if I do .

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@rozy288

Been seeing a FM Dr. Last 5 months . Did extensive bloodwork/ stool testing ( 2 diff types ), urine …
Tried two diff meds ( no more PPI’s ) .. not for years. I only tried a few for a few months . They aren’t good for you and made for short term use only .
So I’ve done ✅ all that , I went on keto diet at her suggestion.
That did not help at all .
I’ve run the spectrum.. still they can’t help me . I’m actually a medical mystery.

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You may need to find another functional medicine doctor that knows how to treat and not recommend a specific diet. You are unique and your gut lining and microbiome need specific supplements to build back up to rid you of whatever you have been diagnosed with. It took me three tries before I found the right functional medicine doctor. And the nutritionist I worked with had my results and guided me with what foods I needed to eliminate for a period of time and what kinds of food are good for the gut - examples: fermented foods (pickles in the refrigerated section of the market, kefir, sauerkraut), omitting fruits high in sugar (bananas, oranges, apples) and consume berries of all kinds, concentrate on organic sad much as possible, use grass fed meats, dairy products, wild caught food. Over time, food in the US has been inundated with too many chemicals. You need to also eat as cleanly as possible. Read labels - I do all the time. I get an almond butter that’s just almonds, no added sugars or stabilizers or added preservatives. It’s more complicated than just going on some diet.
Hope this is helpful.

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